Alcohol cirrhosis : I have been... - British Liver Trust

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Alcohol cirrhosis

l13d profile image
l13d
17 Replies

I have been diagnosed with alcohol cirrhosis., although I'm not convinced this is the reason as I have never been a big drinker. Yes I have been drunk in my younger days but alcohol has never been an issue. I stopped drinking altogether 6 years ago because i had ulcerative colitis . My doctor has agreed to look through all my notes to see if anything is the problem. My question is if you have been diagnosed with alcohol cirrhosis does this disquallify you for a transplant.

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l13d
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17 Replies
cityman62 profile image
cityman62

I very much doubt,if you havnt drunk for 6 odd years that ancient history would be used as a reason to deny you a transplant,should you ever be in that situation,best.

l13d profile image
l13d in reply tocityman62

I'm hoping this is the case. I just get so worried sometimes. My fibroscan score was 61.8 and my liver feels like it is bursting through my ribs; My colitis has decided to make another appearance, and I think this is getting me so down with ever other thing that's going on. I have to have iron infusions ,another ultrasound and colonoscopy and have just been put back on prednisone (which affects me in so many horrible ways. ) so sorry for sounding so down and throwing this out there ,I am only 52 and I feel like a 102.thanks for replying I do appreciate it. You take care

cityman62 profile image
cityman62 in reply tol13d

The iron sounds like a likely culprit for your liver issues,have you googled iron infusion side effects?I don't know to much about prednisone,but that also might be stressing/damaging your liver,I believe it brings a whole raft of nasty side effects with it.It sounds your in that impossible place,where things you are taking to 'help',are making you pay a high price.keep your chin up,I do sympathise,its a pretty dark place to be sometimes.I'd talk to whoever,about Iron+liver problems,it sounds a bad mix.Take care.

carmik profile image
carmik

Hi

Have you seen a hepatologist?

If not you must. There are many reasons for cirrhosis completely unconnected to alcohol.

Unfortunately a lot of GPs are ignorant of this. Fortunately when my husband was diagnosed they knew he didn't drink at all and tested further. His was related to a little known about condition, Alpha 1 Antitrypsin Deficiency, (A1AD).

This also affects the lungs more commonly. If family members seem to suffer a lot with all sorts of chests complaints including COPD, Asthma, Bronchitis, Bronchiectasis, you should be tested for this.

If you do not have a drink problem as such, I. E just a social drinker ,this should not affect your chances of a transplant. But my advice is to stop drinking totally now, so if you do end up needing a transplant you will have been alcohol free for the required 6 months.

Good luck, keep posting

carmik profile image
carmik

Carmik here again. I just spotted that you are having iron infusions.

Overdosing on iron can also damage the liver as in Wilsons Disease where the liver holds on to iron. This too should be followed up.

AyrshireK profile image
AyrshireK

Have you ha a liver biopsy in order for doctors to come up with this unlikely diagnosis? The reason I ask is that ulcerative colitis can often go hand in hand with an auto-immune illness of the bile ducts within the liver called PSC (Primary Sclerosing Cholangitis) which if left unchecked can lead to cirrhosis. 75% of patients with PSC also present with IBD and/or ulcerative colitis.

A biopsy would clearly indicate damage to the bile ducts so should aid with a proper diagnosis.

You need to see a hepatologist as Carmik says, don't be fobbed off. This needs further investigation.

On your question regarding transplant where alcohol is deemed to have been the causal factor then NO it does not bar the person from transplant, however, a lenghty period of monitored abstinence is required (6 months in most cases - with blood tests to check) and then the patient has to sign a disclaimer promising life long abstinence post transplant. Psychiatrists are involved in the assessment process to ensure the patient has the coping functions in place so that alcohol doesn't come back into their lives.

Hope that is of some help, firmly push for a referrral to a proper liver doctor to get this diagnosis sorted out. Sadly even in the medical profession some doctors still see liver damage and say drinker - not the case. Many non-alcohol related illnesses of the liver.

Wishing you the very best of luck.

Katie x

blackbeef profile image
blackbeef

If you are having issues with the lack of Iron you probably have also have a low haemoglobin count (Hb).

In either case you need to be referred to Haemotologist as it is a blood issue which is as a result of your liver disease.

I have Cirrhosis due to NASH and related iron deficient anaemia. I am given iron infusions every 6-8 weeks.to take my Hb and ferritin out of the danger zone. An infusion is just like a blood transfusion except it takes longer, around 5hrs for 568ml. You also have observations every 30mins. I believe side effects can be a headache and feeling nauseous. I have never had any side effects and a few days later feel much better in my self, unfortunately it doesn't last very long. Your Fibroscan score would suggest chronic cirrohsis and a by product of this is your failure to absorb/store iron.

I would strongly suggest that you stick out for an urgent liver biopsy, which will give a definitive picture of the health of your liver. Blood Liver Function Tests are of no indication what so ever if the prove negative.

AlexandriaUK profile image
AlexandriaUK

I also have UC and other health issues so know where your coming from, I'm told that it can have a reaction on your liver, not sure how true that is but I have only ever had minimum amounts of alcohol and none for nearly a year and my Dr and consultants know I'm not lieing.

I started with colitis when I had given up smoking and got food poisoning, how about you.

l13d profile image
l13d

Gosh I don't know how I got colitis. But that was eight years ago before I was diagnosed with cirrhosis. In fact it was while they where investigating a flare up two years ago that they became aware of problems with my liver. Well hopefully now my doctor (who is a gastroenterologist) look through all my notes with fresh eyes to see if anything else is standing out.

Thanks for listening you guys are great

mousehold profile image
mousehold

Get tested for hep C no matter what your past is like. Thousands have it without knowing it and it attacks the liver. Alcoholic cirrhosis is just a lazy diagnosis unless you have had very sophisticated tests done.

angelo212 profile image
angelo212

Alot of great and very helpful answers here. I think I would consider seeing another doctor. Can't believe he didn't mention anything the members said.

l13d profile image
l13d

That's why this site is great. Everybody is in the same (but different) predicament and have many experiences to share. I wrote my post when I was feeling scared and down . I'm glad I did because of the posters always show compassion and knowledge. They have all helped and I thank you all so much xx

HopefulAl profile image
HopefulAl

Just a thought I13d........ what medication were/are you on for your colitis? I was prescribed azathioprine for Crohn's, was on it for 7 years until Setpember of this year and it seems as though it has damaged my liver badly. My gastroenterologist said taking the azathioprine was the better of the two evils, he's not so sure now as my LFT's are through the roof and a recent test (not sure what it's called but used sonic wave via right rib cage) measured me 7/10 th's along his sliding scale.

fisherking1 profile image
fisherking1

You must be sober be six months prior and have testimony from a non-family member.

I'm starting a blog on liver health as I am disgusted with the medical "ticky-box" way of dealing with it. I'll let you know when it's live. Most cirrhosis is NOT caused by alcohol - it's just a convenient answer for most lazy doctors who just refer you for a transplant.

Charl1e profile image
Charl1e in reply to

Completely agree, the "tick-box", culture is so narrow minded, and pretty ill informed, to be honest. Some European countries are so far ahead of us, in terms of research without being controlled by "big pharma", as our health system is. Look forward to seeing your blog, when it's up and running.

in reply toCharl1e

Thanks Charlie,

Got the blog and domain, just need to start writing now - lol

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